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Introduction

A mutual society is one where everyone has the right and ability to participate. It is a society where individuals and their communities are valued for who they are and their contributions to that society.

Health and wellbeing should not, but often do, put barriers in the way of participation. For people with disabilities, participation can be constrained both by personal and institutional factors. It is essential that services are designed to enable those they are meant to support to access them. We should be clear however, that a mutual society defines people by their disability only as far as is necessary to develop an inclusive health service and to tailor services so that they are accessible and effective.

Living independently

The term 'independent living' is used as a shorthand way of saying that people with disabilities should have the same freedom, choice, dignity and control as those that are able bodied - at home, at work and in the community. When we discuss people with disabilities however, we should remember that this term covers many forms of disability, both physical and mental. Many people with disabilities live and work with no or minimal need to access support systems. However, there are others who need support in living independently and a mutual society recognises and enables this, through appropriate services and practical support.

As with anticipatory care, people who are being supported in living independently must be engaged as partners and not seen as passive recipients of care. In this way, NHS Lothian, as a mutual organisation, is being asked to facilitate the development of an approach aimed to support independent living (see Figure 1). In addition, there are statutory arrangements - the Adults with Incapacity legislation, for example - that can empower individuals and improve access to services.

[ Figure 1 ] Independent Living

Independent Living

Taking a strategic approach in Lothian

In 2007 the Lothian Joint Physical and Complex Disability Strategy2 was published. This addresses the needs of people from 16 - 65 years of age who have physical and complex disability. There is a very broad spectrum of conditions, including sensory needs and acquired brain injury, that individuals can experience. These conditions have the potential to affect participation in almost every aspect of daily life. As a result, services support people whose experience of disability may vary a great deal depending on their age, gender and ethnic background, amongst other factors. As people with disabilities get older, they will move on to older people's services. These services will need to accommodate people with illness-related and disability-related needs. Equitable services are adaptive services that respond quickly to changing needs so that they can deliver appropriate and effective care.

While focusing on physical and complex disability, the strategy recognises that individuals have a range of needs and these may be covered by separate strategies available for learning disability (which includes autism spectrum disorders and Asperger's syndrome) and mental health.

The Joint Lothian Learning Disability Strategy Review3, recommended moving away from a resource-led approach towards a person-centred approach, to achieve better quality outcomes for individuals. Pilots to show how we can best effect this change are underway in Midlothian and East Lothian and person-centred approaches to strategic planning using the Shaping the Future Together4 planning tool have begun.

The Review also recommended the creation of a Learning Disability Partnership Board with the intention of providing oversight of learning disability provision across Lothian. The Board will be run according to the inclusion and accessibility guidelines proposed by 'People First'5. This means that half the Board will be people with learning disabilities, parents and family carers and the other half will be professionals in the field.

Several interventions, designed to improve the quality of care and quality of life for people with disabilities are underway in Lothian. These include 'In Control' projects to provide social care on a person-centred basis as illustrated in Box 1.

[ Box 1 ] In Control in Lothian

'In Control' is a national programme to reorganise social care to enable individuals who need support to take more control of their lives and fulfil their role as citizens. It uses a transparent system of resource allocation, based on entitlement. Individuals complete a self-assessment and, if they meet the agreed criteria, are automatically entitled to a fixed level of funding associated with that level of need. They then go on to propose and agree a support plan with the local authority. Experience in over sixty areas of England suggests that existing budget resources can be used more effectively this way and that resources can be freed up for people with the highest level of need. The 'In Control' pilots running in Lothian are already providing valuable lessons in new approaches to meeting individuals' needs. These pilots will be evaluated for their impact on equity of access to services.

Key Messages

  • A mutual society is one in which everyone can participate
  • Independent Living is what we all want - and we can make happen.
  • NHS Lothian will be serving its patients better if it helps people to have an independent life.